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Lupus Lessons

*Make a "To Do" List
Make a list of the things that Lupus is keeping you from doing, including everything that you want to be able to do, say and feel once you get Lupus under control. Jot down everything you’re thinking, no matter how crazy it might sound. Be as open and honest with yourself as possible. Don’t be shy or reluctant about listing things of little consequence or things that you’ve never admitted hurt to have lost. Now is your chance to uncover what it is that you miss the most about life right now. It’s your opportunity to grieve for yourself, while laying the ground work for a hopeful future. Just this once, don't hold back in mourning your old self and abilities. Reassure yourself that it's normal to be sad about it and okay to admit it. In drafting your list, allow yourself to come to terms with the resentment and frustration you’ve been harboring, mostly against yourself. Only when you allow the emotionally protective walls you’ve spent years constructing fall to the ground, can you begin to take steps toward healing. And only then can the rebuilding begin.

*Control the Role
Imagine your life as one big theatrical performance (not too difficult, right?) You are, of course, the star of the show, and those close to you will be playing the requisite supporting roles. Now assign Lupus a role in the production – that of stagehand. Lupus’ job is to be as inconspicuous as possible: to stay behind the scenes, disrupt nothing, and if movement is necessary, attempt to blend in with the scenery. You give this very special, important role to your disease, not because you necessarily want it around, but because you know it’s not going anywhere anytime soon. Acknowledging that it’s a part of the play, and giving it a job to handle will hopefully keep it busy and out of your way, allowing you to give your best all-time performance.

As you act out the scenes in your life, ask yourself the following: is what I’m about to do going to allow Lupus to upstage me? Will my disease, who’s supposed to be waiting idly behind stage, have an opportunity to run across stage, leaping and bounding and causing a scene? For example, if you work extra late, or refuse to go to the doctor, will you be encouraging Lupus to crash the scene? Keep these things in mind as you go about your daily performances and allow yourself to be the center-stager you’re meant to be!

*It is Not Your Fault
Pick three areas of your life that have decidedly changed since you were diagnosed with Lupus. You can probably think of dozens of examples, but right now, I want you to focus on just three. Perhaps it’s your ability to walk your dog, have patience with your spouse, and your ability to take on extra projects at work. Whatever three things you feel in your life have been compromised by Lupus, write them down. Now, beside each of them, write, “It’s not my fault.” Realize that you aren’t to blame for these alterations in lifestyle. They are either the direct or indirect result of being diagnosed with Lupus, and you weren’t in control of getting Lupus. You didn’t choose it; it just happened.

By no means does this excuse you from taking responsibility for your actions and dealing with the fact that you have an illness. But what it does mean is that you can no longer blame yourself or feel bad about “letting” these changes occur. Lupus, in addition to being chronic, inflammatory, systemic, and debilitating, is also life-altering. Acknowledging that life is going to be different with Lupus will allow you to stop blaming yourself for your limitations (most of which are out of your control anyway), and start dealing with the disease the best you can.

*Prepare to Understand
Most of the people around you don’t have Lupus, and hopefully, they never will. Because they’ll never experience the full-fledged symptoms of Lupus, they will never fully comprehend what it’s like to have the disease. The more you attempt to explain it, the more frustration you may cause yourself. Without a point of reference, your descriptions are lost. Even attempting to relate the mental and physical anguish you encounter may be futile. While your female friends may have experienced swollen fingers during pregnancy, or your athletic friends may identify with joint pain or exhaustion, they can never fully grasp the enormity of having a disease in which, a) symptoms like these aren’t usually attributed to one particular experience, and b) these ailments may never cease to exist. You could spend a lifetime trying to convey the nature and severity of your pain and suffering in contrast to the symptoms they’ve experienced, but why waste the time? Instead of straining to be understood, strive to understand the limited perspective of those around you, and learn to accept the constraints they have of understanding you and your disease. Once you allow for the fact that those around you can’t be expected to know any better, maybe you won’t not feel compelled to defend yourself or correct their misconceptions at every turn. People around you are always going to try and identify with your situation. How well you learn to accept and view those attempts will improve your relationships and make communicating about Lupus that much easier.

*Dump the Day
A friend of mine came up with relaxing, meditative routine, fondly referred to as “Dump the Day.” During the worst of my days with Lupus, I performed it religiously each evening. Now, I call upon it from time to time when I’m in special need of relief or renewal. Here’s how it goes:Step 1: Before you retire for the night, find a comfortable spot in your favorite chair or on your bed where you can sit for 5 or 10 minutes without disruption.Step 2: Sit quietly with your eyes closed, letting the thoughts of the day swirl in your head. The most troublesome highlights of the day may surface more quickly, but allow all the events of the past 12-24 hours to come into your mind.Step 3: Slowly, let those thoughts, troubles, and anxieties slowly trickle away, “dumping” them out of your mind.Step 4: Continue until all the worries of the day have been eliminated from your mind, even if only semi-permanently. At least it will be long enough for your mind, body and spirit to experience relief and for you to get some much needed rest.

*Eliminate Should from your Vocabulary
Every time you think about something that should happen or that you must do, rethink it for a moment. Does it really have to happen, or do you just want it to? I agree many things on your plate have to get done, but I’d be willing to bet the list that you deem obligatory could be cut in half if you take a good, hard look at your “shoulds.” Instead of wasting time running that one last errand that could wait until tomorrow, choose to do something that will make you feel good about yourself. Stop for a relaxing cup of coffee, find a quiet spot to browse through a book or magazine, or just take a moment to breathe. Taking care of yourself is the first step to living well with Lupus!

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PRISCILLA FREDERICK said…

I started out with Rheumatoid arthritis 20 years ago. I have been on Humiria for the last 10 years. Last summer i had this rash all over torso and arms (i thought it was sun poisoning) long story short the humiria has given me the "lupus like syndrome". I am devastated with this diagnosis. I have not had a shot of humira since the end of march 2017, i was told that it takes 120 days for the humira to hopefully be out of my body. I have endured muscle aches (a lot of joint inflammation ( i am use to the pain of inflamed joints from having RA) hair loss and a lot of red bumps all over my arms and now bruising on my arms! I feel so bad for people that have lupus it is awful and it takes a toll on me emotionally. I can no longer enjoy the beach because the sun is now my enemy. I have to decide next month which medication I am willing to try for the RA, I am terrified of all of them. my biggest fear is if this lupus like syndrome is a syndrome or is it here to stay?

Priscilla - Those symptoms aren't any fun at all! I had a colleague who experienced lupus-like symptoms, very similar to yours, because of a drug, and she couldn't believe how awful they were! In fact, she was in the HR dept, and she came to my office to apologize for how unsympathetic she had been. Once she experienced the very same symptoms I had presented as reasons for struggling at work, she fully understood my plight, and started fighting for me. But as is the case with Drug-induced lupus, her symptoms subsided completely. I hope yours do soon. You might keep a list and/or chart of your symptoms to share with your doctor. It might help confirm for you and your doc that the symptoms are all related, that they do indeed subside, and remind u of any warning signs in the future. My fingers are crossed for you!

I was diagnosed in 2012 with Lupus, RA, Fibro and I'm currently 39. I also have thyroid disease which I've had since 2002. This hasn't been a fun experience. What do I do with the husband who knows I have these diagnosis but doesn't understand or comprehend the magnitude with which they affect my body, mind, just overall health? In the last 3 years I have gained a lot of weight, become chronically fatigued so I'm not able to help much around the house. Most recently endometriosis has been discovered. He's becoming exhausted with being the primary person who does the cleaning and he works beyond the usual 8 hour day. It's not fair for him to come home and work after he spends 14 hours of his day working already. I have a part time job and some days I'm wiped out by the time I get home. I don't have the strength, willpower, energy to help! I can only fold a few articles of clothing because my arms become tired and achy. =( I don't know if he truly understands what having all these issues really means and how they all affect me and my abilities. How do I get him to really understand it?

Anonymous - I'm sorry to hear that your conditions are flaring. When you are tired and in pain, it seems impossible to undertake any task - I remember that well! I also know how important it is to feel supported. It can really make a huge difference. Even WITH a supportive husband, you feel guilty about having them do extra, and doing more than their share of housework. I remember asking my sister to come over and help a little, just so it didn't have to all fall on my husband's shoulders. It seemed to really make a difference. He appreciated the help, and the fact that I wanted to relieve him - and she REALLY liked being able to step in and do something. There's so little friends and family can do about our symptoms...so helping around the house, making a meal, cleaning, etc. really is where they can step up. You might also acknowledge how much he's doing (you probably already do)...and maybe together, you can make a list of things that can "slide" while you're not feeling your best. You'll both be working together to alleviate the extra work - and you might even be able to find some humor in there. I remember we let our kitchen floor go waaaaay too long one time, and it was actually a unifying experience, because we were both in it together. And maybe reading a few past blog posts would help him understand how much pain is involved. Sometimes it's easier to grasp the situation when you're reading about a stranger, rather than someone you're so emotionally connected to. I hope that helps. I wish you all the best - especially with your symptoms. Don't hesitate to mention all to your doctor, too. They might be able to make some tweaks to help manage things. Take care

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Sara Gorman was diagnosed with systemic lupus at the age of 26. Determined not to let lupus rewrite her plans for the future, she fought to maintain her demanding work schedule, busy social life, and invincible attitude. But after four years of running her body into the ground, she realized she was fighting life, not living it. Committed to working with the disease rather than against it, she made it her top priority to start living well, despite lupus.
Her book, "Despite Lupus: How to Live Well with a Chronic Illness", details the steps it took to reach that goal.
In 2012, Sara also launched Sara Gorman’s Pillbags – a line of fun, fashionable pill organizers. The stylish, fabric pillbags can be found at retail stores across the country, on Amazon.com, and on her website at www.pillfold.com.
A native of Indiana and graduate of the University of Notre Dame, Sara resides in Northern Virginia with her husband and two young daughters.